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Attitude adjustment
Gig Harbor
Posted: Friday, July 26, 2019 12:16 AM
Joined: 3/10/2016
Posts: 569


I am sadly in need of one. I just read thru the 7 stages that another person posted. My husband is in beginning stage 5. His ADL's are good but he is starting to question why he should change jeans at least every 3 days and underwear as well. Not arguing about it but I see that coming. He does not drive, gets lost in new places because his sense of direction is gone, memory is 5-10 seconds, now always says that he will get what I order when we eat out and doesn't think about household chores. He is still able to do them if I ask and show him what needs to be done. I spent 40 years caring for patients and this is not how I wanted to spend retirement. He is very likely to be on this journey for 7-10 years. A week seems endless - boredom and loneliness are always present. How do I wrap my mind around 10 years? I don't think there will be any "me" time when this is done. I am now finding that I don't want to see old friends whose lives are wonderful. Jealousy steps in and I just don't want to have to pretend that all is OK. Luckily I have friends who are going thru the same things as I am and that helps a lot. Most of the time he is pleasant and happy. I would be too if someone was taking care of all my needs. I am not facing the monumental struggles that some of you are so I try to be grateful for that. What are some things that you have found that help you be able to look into the future and not want to just hide? You are all heroes .
Crushed
Posted: Friday, July 26, 2019 5:30 AM
Joined: 2/2/2014
Posts: 4673


No one absolutely No one is entitled to a personal care taker

print it out in big letters and put it on the wall 

you EARN you earn a caretaker by being easy to take care of.

DW was a wonderful physician, wife, and mother.  She was VERY used to having her own way.  She was a senior Medical research executive and I ran the house. 

But I had to tell her on more than one occasion that her behavior was totally unacceptable (yes I know it was due to the disease.)  

Stress kills caretakers.

I got help in the house so I could have a reasonable professional conversation on the phone and run errands where I could not take her.

She did not like it but I absolutely insisted

She became psychotic(delusional)  and also started wandering. My health was deteriorating So she was placed in MC 18 months ago.  

I visit every day. I love her very much but she is safe there. 

No guilt ever

 

 

 

 

  


SSHarkey
Posted: Friday, July 26, 2019 7:39 AM
Joined: 3/15/2018
Posts: 150


Gig Harbor, I know this may sound ridiculous but you asked what we do to keep ourselves sane through the long wait. I started back to school! Online! I’m working on my doctorate, a dream I’ve had all my life. One of my kids encouraged me to do that. I was drowning in this disease process and had no life of my own. Like you, my husband is still very functional and I felt like I was in a permanent limbo land. This has given me a completely new perspective and a mental escape from all things AD. At the same time I’m at home and our life together continues.  I know as he advances it will require more personal attention, but I am hoping I can begin to use home health services to assist me to take off the daily burden some and allow me to be his wife and not so much his nurse. I recognize financially in the end I may end up renting a room in my kids house, but it’s worth it to me now to maintain my sanity. I feel like I’m preparing for my life after his death. Something to move forward to while still savoring as much of the “we” time as I can.
Wish2Roam
Posted: Friday, July 26, 2019 11:44 AM
Joined: 2/16/2018
Posts: 134


Gig Harbor, I can so relate.  My DH is a little more solidly in Stage 5, with 6 around the corner I think.  Like you, I feel so lucky he is very easy to care for.  The loneliness is overwhelming though because there's no conversation or companionship.  I never in my wildest dreams thought walking around Hobby Lobby would be the highlight of my day.  We were that happy couple, always talking, traveling, planning the next trip, had our favorite table at every restaurant in town.  The last time we ate out, I left the restaurant fighting back tears.  We sat there in silence like total strangers.  For the future, like you, I'm not sure I have one either.  DH is very physically healthy and will likely live for many years and I'll be too old and tired to do anything by myself.  However, I do dream.....I have a notebook full of things I want to do, trips I want to take, changes I want to make to the house.  Seems, in my mind, I'm trying to prepare myself for when he's gone.....ambiguous grief is alive and well with me everyday.  DH is here in body, but emotionally and mentally, he's retreated to his own safe little bubble.  He's also quite capable of doing little chores around the house but can't initiate anything on his own.  If you have a hobby, pursue that as much as possible.  I love to take pictures so I take on-line photography classes; no substitute for the companionship of my husband, but a thread to help me hold on to my sanity for another day.  Hang in there, we're doing the best we can.
Mike&BrendaTX
Posted: Friday, July 26, 2019 9:28 PM
Joined: 7/10/2017
Posts: 617


Gig Harbor wrote:
He is very likely to be on this journey for 7-10 years. A week seems endless - boredom and loneliness are always present. How do I wrap my mind around 10 years? I don't think there will be any "me" time when this is done.

You cannot focus on 7-10 years.  That will make you crazy.  It sure did me when I put DW's data into one of those computer programs that estimates how much time is left, and it came up 8 years.  I'll be over 80! No life left at all.  My wife has had symptoms of AD for 15 years already, and I've been a 24/7 caregiver for almost 7 years.  8 more? Of course it's crazymaking.

Then someone I trust told me, "would your attitude be different if you knew DW only had two months left to live?"  I had to admit, focusing on 8 more years was making me depressed and crazy. 

I decided I have to live in the moment, mainly because nobody knows how long it will be (no matter what anyone says), and focusing on the long term may be making me depressed over something that may not happen at all.  I focus on just making her happy for a while, then I'll reassess when the time comes.  I guess you could say I had an attitude adjustment.  I feel much better and more free now.

As for "me" time, by all means hire someone for 12 or more hours a week to come and watch/care for your husband, so you're free to go out.  Even a small amount of time like that does wonders for your attitude.  I no longer feel totally trapped.  Once a week, I even go out to the senior center and play bridge, which is great for feeling "normal" (my bridge partner is a lady who's 96 years old, and sharp as a tack at the bridge table, LOL)  I can shop, get the car worked on, sleep, loaf, or go to the doc's. It's amazing how normal it feels.

Mike


modo2
Posted: Saturday, July 27, 2019 1:56 AM
Joined: 2/8/2018
Posts: 53


I can't tell you what I focus on to make life livable - I just go through the motions every day and take my little anti-depressant every night so that I can get through the next lonely day. The disease has my DH firmly in its grip.  He can still do ADLs, but he would not shower and keep clean if I were not there to coax (or sometimes downright demand) him through it.  I have decided it is time to place him.  I sometimes take him to respite at a place where others live and he stayed through dinner tonight.  When I arrived, without him knowing it, I watched him at the table, making sure he didn't see me.  A woman was talking to him and he seemed to be listening and was responding and seemed interested.  What a gift for him!   To be with a group of people who are struggling the same way he is.  Others who don't tire of hearing the same stories over and over and who don't get irritated by the hearing the same questions repeatedly.   I know many of you bear this disease better than me - I've never been long on patience.  But I think it is important for all of us to know ourselves.  To know our strengths and our limitations.  And based upon that, to make decisions about out LO's health and happiness and for ourselves - to figure out how to get through the day and survive this disease.   I toast each and every one of you - whether you are caring for your LO at home or advocating for your LO who lives elsewhere.  As was already said - your are ALL Heroes.  

 


Gig Harbor
Posted: Saturday, July 27, 2019 10:29 AM
Joined: 3/10/2016
Posts: 569


Thanks everyone for the ideas. I do like the idea of taking online classes. I tried a bridge class but decided that bridge is not my game. I might give it another try because there are lots of opportunities to play with others every week. Mike I think you are right about not looking so far ahead - it is overwhelming and depressing. We just went away for a week, arriving home on Wednesday. On Friday I was talking about what we did and my husband has absolutely no recollection of going anywhere. He wants to visit his family this year but I am hesitant to spend $4000 (approx cost of airfare, hotel, car, food ). I know he would enjoy it in the moment but by the time the plane landed at home he would have forgotten everything. It is also stressful handling everything and he gets confused when away from home. We may settle for a car trip of 2-3 nights away. He seems happiest just being a passenger as I drive down the road. My goal is to balance our happiness. I can't destroy my life to try to give him a perfect life. I want to survive this time in our lives so I can spend time with family in the future.